MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Some melanomas have KRAS, some have both KRAS andBRAF.

 

http://www.sciencedaily.com/releases/2012/01/120111090607.htm

Ganetespib Showed Activity in KRAS-Mutant NSCLC as Monotherapy and in Combinations

ScienceDaily (Jan. 10, 2012) — The investigational drug ganetespib, a synthetic second-generation Hsp90 inhibitor, slowed the growth of cancer cells taken from non-small cell lung cancer tumors with a mutation in the KRAS gene. The drug was even more active when combined with traditional lung cancer treatments and other investigational targeted therapies, according to preclinical study data.

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David A. Proia, Ph.D., and Jaime Acquaviva, Ph.D., scientists at Synta Pharmaceuticals Corp., presented the data at the AACR-IASLC Joint Conference on Molecular Origins of Lung Cancer: Biology, Therapy and Personalized Medicine, held Jan. 8-11, 2012.
I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: Jim M.

Anybody else see the press release yesterday from Bristol-Myers Squibb about four and five year survival rates of Yervoy patients in several different trials? (see www.bsm.com, select news, and then press releases.) Here are the headline bullets:

  • Long-Term Follow Up From Phase 3 Study (024) Demonstrated That 19.0 Percent of Treatment-Naïve Patients Who Received YERVOY at Investigational Dose of 10 mg/kg Plus Dacarbazine (DTIC) Were Alive at Four Years vs. 9.6 Percent of Patients Treated with DTIC Alone
  • Few New Immune-Related Adverse Events Occurred Beyond Two Years of Treatment in Study 024
  • Five-Year Follow Up from Three Exploratory Phase 2 Trials Add to Growing Body of Survival Data for YERVOY in Metastatic Melanoma
  • In Both Analyses, Updated Survival Rates Remained Relatively Stable Over Time                                                                                                                                                                                                                                             

But it was the details of that reports that had some remarkable statistics. Here's one taken out of context from the results of 3 phase II trials (there were varying dosages of Yervoy among other things) so read the article:

“In treatment-naïve patients, the five-year estimated survival rates ranged from 38% to 49%, which was unchanged from the four-year rates.”

I don't try and interpret clinical study data because there are so many variables it hard for me to make a decisive conclusions(and I'm a scientist) but these claims sure sounds good.

I was diagnosed with stage IV melanoma about a year ago. After I finished my Yervoy infusions (3 mg/kg) six months ago, I have had reductions or stable tumors in all three subsequent scans (Thank You God!). But I'm having trouble finding current information on how long this this might continue. I know we all are different but would like to hear about longtime (greater than a year) survivors.

Thanks,

Mike

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Linny's picture
Replies 3
Last reply 10/2/2012 - 7:47am
Replies by: Linny, JerryfromFauq, Anonymous

 

http://www.sciencecodex.com/genetically_engineered_immune_system_fights_melanoma-99369

MAYWOOD, Il. - Loyola University Medical Center has launched the first clinical trial in the Midwest of an experimental melanoma treatment that genetically engineers a patient's immune system to fight the deadly cancer.

A batch of the immune system's killer T cells will be removed from the patient and genetically modified in a Loyola lab. Two genes will be inserted into the T cells so that they will recognize tumor cells as abnormal.

The patient will undergo high-dose chemotherapy to kill most of his or her remaining T cells. This will make room for the genetically modified T cells when they are put back in the patient. The modified T cells, it is hoped, will recognize the tumor cells as abnormal and then attack and kill them.

"This clinical trial is a unique attempt to manipulate a person's own immune system to attack their cancer in a more effective and specific manner," said Joseph Clark, MD, one of the principal investigators of the trial.

The purpose of the Phase 1 trial is to determine the optimum dose and whether the treatment is safe. Four doses will be tested, with the highest dose consisting of about 5 billion genetically modified T cells. If Phase 1 demonstrates the treatment is safe, investigators will proceed to Phase 2, which will determine whether the treatment is effective.

Melanoma is the sixth-most-common cancer in Americans, and the most common fatal malignancy in young adults. Incidence is rising dramatically. About 1 in 50 people will be diagnosed with melanoma. In the 1960s, it was 1 in 600.

Surgery is highly successful if the cancer is caught early. But if the cancer has spread to other parts of the body, the five-year survival rate is only 15 to 20 percent, according to the American Cancer Society.

"This is a terrible, devastating disease," Clark said. "It starts on the skin and can spread to just about anywhere in the body." The clinical trial is open to patients with metastatic melanoma who are no longer responding to standard therapy. "We need better treatments," Clark said. "Our clinical trial is designed for patients who have no other options."

The experimental immune system therapy was developed by Michael I. Nishimura, PhD, director of the Immunotherapeutics Program at Loyola's Cardinal Bernardin Cancer Center. The cells will be prepared in the Robert R. McCormick Foundation Center for Cellular Therapy in the Bernardin Cancer Center. Nishimura is principal investigator of a five-year, $16.3 million grant from the National Cancer Institute. "Our goal is to create novel therapies for the treatment of advanced malignancies," he said.

Additional funding for the trial comes from a National Cancer Institute grant to Lentigen Corp., which makes the vector that delivers the genes to the T cells, and from the American Recovery and Reinvestment Act (the economic stimulus bill).

Clark is a professor in the Department of Medicine, Division of Hematology/Oncology of Loyola University Stritch School of Medicine. Nishimura is a professor in the Department of Surgery and associate director of the Oncology Institute of Loyola University Chicago Stritch School of Medicine.

Stage III, Unknown Primary; 1 positive node in left axilla

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Kellie-T's picture
Replies 4
Last reply 10/1/2012 - 9:12pm

I have noticed since taking Zelboraf that my teeth are more sensitive and my gums bleed every time I floss. Anyone else experience more than unusual bleeding from routine dental care?

Thanks

Life is not by accident. Make every minute count.

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SharonAust's picture
Replies 4
Last reply 10/3/2012 - 8:29am

Hello from Sydney Australia,

My friend has Stage IV unresectable melanoma (still confined to lymph). She has been on vemurafenib (Zelboraf) and had an unusually bad experience with side effects. She's been offered a place on trial of E7080, but is nervous to go on another clinical trial.

Any info on side effects from E7080, especially compared to Zelboraf?

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JerryfromFauq's picture
Replies 3
Last reply 10/1/2012 - 6:16am

Received my Lab Corp CBC results from the 14th.   
WBC  was 3.6 vs the 2.57 on the 8th (Ref: 4.0-10.5).
RBC         3.11 vs the 1.99 on the 8th (ref: 4.14-5.8)
HGB         10.6 vs the 7.5 on the 8th (ref: 12.6-17.7)
Not great, but much better than I started the month! 

Supposed to get another CBC done this week.  Feel like the counts should be about the same. 

Hopefully I can start back on the Gleevec.

The past month is the first time that the WBC has dropped below the normal range.  The RBC has ran between 3.13 and 3.6 for the last two years on the Gleevec.

The HGB has ran in the 10.s for the last two years (7.5 is  the point they do transfusions).

I'm me, not a statistic. Praying to not be one for years yet.

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http://clinicaltrials.gov/ct2/show/NCT01584648

The trial will randomize half the patients to the combo.  The other half will get only the BRAF inhibitor.  I have been on a Phase I/II trial of these two drugs for almost a year-and-a-half (getting both drugs), and have done very well.  Also, very good interim results were reported at the last ASCO conference. I think that anyone who can qualify should seriously consider this trial.

Best wishes,

Harry

Too ugly to die!

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JerryfromFauq's picture
Replies 2
Last reply 9/29/2012 - 4:02pm
Replies by: JerryfromFauq, jag
 

An Emerging Role for Anti-inflammatory Agents for Chemoprevention.

Source

Division of Gastroenterology Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA, achan@partners.org.

Abstract

There have been a number of promising recent developments in the prevention of colorectal cancer. This book examines in detail important aspects of the current status of and future prospects for chemoprevention of colorectal tumors, particularly using anti-inflammatory drugs. Research into the mechanisms that lead from early colorectal adenoma to colorectal cancer is discussed. The role and modes of action of available anti-inflammatory drugs, such as aspirin, celecoxib, and sulindac are described and recent data from trials of aspirin are reviewed. In addition, the possible impact of nutritional agents with anti-inflammatory properties is considered, and strategies applicable in those with a high level of genetic risk are evaluated. An important feature of the book is its interdisciplinary perspective, offering highly relevant information for gastroenterologists, internists, general practitioners, oncologists, colorectal and gastroenterological surgeons, and public health practitioners.

PMID:
22893197
[PubMed - in process]
I'm me, not a statistic. Praying to not be one for years yet.

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Kimmie Kay's picture
Replies 5
Last reply 10/2/2012 - 1:17pm

I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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I am hoping to find someone who also has Ocular Melanoma that can help me thru this!

I went to my eye Dr on July 26, 2012 to have him check a "shadow" that had developed in my right eye,

He saw "something" and immediately sent me to a retina specialist who would "see me as soon as I could get there"

Within 5 hours of getting out of bed that morning I had a diagnosis of melanoma..inside my eyeball! 4 days later, I am at the Universityof Cincinnati being scheduled for radiation plaque therapy.

My "official" diagnosis after biopsy and having the raditation implanted for 5 days is "Ciliochoroidal melanoma" that was 16.5mm acrossand 8mm thick. 

I am now legally blind in that eye and have a cataract beginning to cover the lense.  The Dr said the cataract can't be removed for 3-6 months. Has anyone here been thru this? Will my sight ever return?  While I am extremely thankfull that the treatment is working to shrink the tumor, I make my living driving a school bus! Obviously, I can't return to work with only one eye and am afraid I am going to use up all of my sick leave before the cataract can be removed.

Can anyone help me? 

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sjl's picture
Replies 5
Last reply 10/1/2012 - 2:03am

My husband had his 3rd round of carbo/taxol for his stage 3 mucosal melanoma today.  Before the treatment, they did a scan and his tumors have shrunk 75% plus a second primary lung cancer is shrinking before they got to the radiation they are going to do!  The doctor is very happy and said that sometimes, with mucosal, they can get a durable response with chemo.  Anybody here have mucosal?  I'd like to hear of your expeeriences.  He will have at least two more rounds of chemo and another scan in 6 weeks to see how things are.  So many people are praying for him and our prayers are being answered.

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/28/2012 - 11:20am
Replies by: Liz C, Anonymous, Janner

A shave biopsy in early July, reviewed by 2 top dermatopaths and UCSF, indicates likely MIS.  Am trying to figure out how to proceed to get the highest possiblity of cure (most important) while minimizing scar visibility.  

This article from the April 2012 Dermatology Journal is influencing my decision greatly.  http://dermatology.jwatch.org/cgi/content/full/2012/406/

"To clear the melanomas, 6-mm margins were sufficient in 86% of cases, 9-mm margins cleared 98.9%, 1.2 cm cleared 99.4%, 1.5 cm cleared 99.6%, and 100% of lesions were cleared with 3-cm margins. The 9-mm margins were significantly superior to 6-mm margins (P<0.001).

My Mohs surgeon (former 11 yr. chief of derm surg at major medical center) is offering 2-3 mm margins to start with and immediate closure.  The plastic surgeon is offering a WLE with 5 mm to start, closure, and if that is not enough, the next cut is 5 mm further out past the first margin.  

In the article, 6mm margins has proven to be better -- and 9 mm is much better.  So, I'm considering wider margins than have been offered to me.  

It's very tempting to go with the Mohs surgeon -- the slow Mohs approach.   I will only accept path report on stained, permanent slides (with several en face cuts to the tissue so the margins can be examined well).  The path report will be done at UCSF -- where Mohs surgeons are trained. 

In this particular location, on the cheek, I'm unclear about WHEN the value of Mohs surgery starts to drop off (if it does?) and WHEN does WLE start to offer better cure.  Does the Mohs surgical site marking technique still carry much value -- if the best way to handle MIS is to keep expanding the margin until no more abnormal melanocytes are found? 

Thank you very, very much for any clarification you may be able to offer -- or documents to suggest.   

p.s. FYI, separating Mohs surgery from the pathology work (by sending tissue elsewhere) is considered by AETNA to not be Mohs surgery at all. 

  Aetna Note: 2012:  Note: Mohs micrographic surgery requires a single physician to act in 2 integrated, but separate and distinct capacities: surgeon and pathologist.  If either of these responsibilities is delegated to another physician who reports his/her services separately, the use of the Mohs micrographic surgery CPT codes is inappropriate.

 Source:  http://www.aetna.com/cpb/medical/data/300_399/0383.html

 

"A diamond is just a piece of charcoal that handled stress exceptionally well." —Anonymous

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NYKaren's picture
Replies 7
Last reply 10/3/2012 - 9:25pm

Hi everyone.

 

 I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

He and my onc. derm, Dr. Halpern, have been frustrated because they couldn't find anyone here to compound it.  Turns out, it's been on his mind all these months, and he had just (as in earlier today) met a reseacher from Rockafeller University (research university, Dr. Leves, who uses this compound.   I just spoke with him, and he told me that "I'm just what they're looking for!"  Imagine that!  So I'm waiting for the nurse coordinator to call me to set up a screening. 

I'm beyond shocked that this has been on Dr. W's mind for all these months...that's just the kind of guy he is.

Could it be that maybe, just maybe, this would work?  Stay tuned.

karen

Don't Stop Believing

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Maureen038's picture
Replies 12
Last reply 9/29/2012 - 3:14pm

My husband just found out results of his lung biopsy and his one cm lung nodule is melanoma. He met with a surgeon today. He was stage II in March and now we are dealing with stage IV! I am so scared!! They will remove the nodule very soon, but he will be dropped from the study because the interferon didn't work. We live in the Washington/dc area. My husband is also negative for c-kit and BRAF which really limits our choices. Does anyone have any recommendations? yervoy? Anti pd-1? Supplements? I am desperate to help my husband and keep my sanity at the same time. We are seeing a melanoma specialist at WHC, but we are scheduling a second opinion at Hopkins. Thank you for any help!
Maureen038

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kbc123's picture
Replies 16
Last reply 10/24/2012 - 8:34pm

Hi All - I feel the need to post this current situation I was handed.  I am 3A, doing my follow ups as I should with a Melanoma Specialist ( as well as had two visits to NYU for a second look )   I go for my body checks and CT scans consistently.  I had a CT scan in January which showed I had a mass on my Gall Bladder.  Had an Ultrasound that showed - Yes there is something there.  Now, DO you watch and wait and take your chances or get that part removed?  Of course, my personality, get it out.  Comes out two weeks later, I find out it was NOTHING, a benign tumor.  Okay, that problem over.   The stress is enough to kill you. 

Fast forward to September - I again have a follow up CT scan as I should.  Chest, fine  Pelvis, fine  Abdomen?  Well there is a spot on your liver.  Radiology is suggesting a PET scan for metastasis to Liver.  Now, I am besides myself.  My doctor tells me, no PET scan, we want an MRI to see it more clearly.  He doesnt think its anything to worry about.  Oh, OKAY.  No worries. 

I had the week from HELL, never have been so scared in my life.  I get the MRI Monday, wait for results but in the meantime, i read into everyone's moves - the radiologist attitude ( she was so nice to me, she must KNOW i am on my way OUT.  )  Even when the doctor called me yesterday, I heard the voice on the phone and in that instant, I just hear that they are trying to find a way to tell me the horrid news that i am now a Stage IV.   Well, my craziness and assumtions are totally wrong.  I have a clear MRI ( as the doctor said )   The liver is clear.  Gall Bladder surgery and messing around in there back in february could have picked something up or I could have breathed wrong or had an internal muscle reflex that made a spot show.  I cried, all day.  Tears of happiness, tears of stress release.  I really cant explain it.  Maybe someone out here knows what I am talking about.

So , instead of putting myself in a Stage IV warrior category, i am still my same ole, same ole 3A and waiting for the next three months to go by so I can do this all again.  STRESS can KILL You.  I am currently looking for someone to help me with that part of my disease because I think that STRESS will kill me before the beast will. 

I hope this note finds all having a happy healthy day. 

 

Kathy from NJ

Still and hopefully always will be a 3A

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